Hello,
I'm new to this forum I've been reading some of the information here for about 2 weeks. I was diagnosed with SCC on my tongue Feb 3. I have surgery next week to remove the tumor as well as some lymph nodes from one side of my neck.
A scan did not show that anything had spread to the lymph nodes so they are taking them out as a precaution. So it's a T1N0M0.
A bit about myself, 28 year old, healthy and fit, never smoked. Noticed sore on tongue around Thanksgiving 2010. Saw dentist for cleaning and to ask about sore Jan 25 since it seemed as if it wasnt going away on it's own and I was getting worried and it was becoming painful. He referred me to an oral surgon where biopsy happened Jan 31. Oral surgeon called me on Feb 3rd to tell me about the SCC.
Since the diagnosis I've been to specialists where they reviewed my biopsy slide, I got a scan, and he then met with a team to discuss my treatment plan. The doctor did a great job explaining everything to me and answering all of the questions I have had for him. From what I've gathered if I was just having the tumor removed from my tongue it would be outpatient (the amount/location of removal should not affect my speech or ability to eat). But since I am also getting lymph nodes out I will be in hospital 3-5 days.
I'm glad that this was caught early but am still trying to process everything that's happened in the last month. This will be the first surgery I've ever really had except for removal of wisdom teeth. So I'm a bit scared and really not sure what to expect. If anyone has any insight as to what I can expect after removal of part of my tongue and lymph nodes from one side of my neck, that would be great.

Thanks

Hi Claire, welcome to OCF! You are young to be going thru this. Your age will help you to recover quicker than someone who is much older, say 60s. Im sure you are afraid, thats a normal thing being afraid of what is unknown. I have not gone thru the type of surgery that you are facing. But I have gone thru several other surgeries to remove cancerous tumors from my cheek and jaw. Im hoping you are being treated at a cancer center where they are familiar with oral cancer.

Going into any surgery just remember the doctor is taking a piece of your body away. They are skilled at this and will do their best to take as little as possible but still get all the cancer. You will be a bit sore but they normally will do a good job keeping you under pain meds. Make sure if you hurt to tell your nurse so they can adjust whatever you are getting for the pain. It will not help one bit to be in pain. Many hospitals are short staffed so do not wait til you are in agony to call your nurse, it could take a few minutes before they will come.

Will you be having any other type of treatment like radiation? Or is this going to be dependent upon the outcome of the lymph nodes? Even if you have been told this will not affect your eating, it will probably be uncomfortable to eat for about a week or two. You probably will be a bit sore and may not feel like talking very much for a few days. This is normal so do not be surprised if you encounter this as well as being swollen.

I wish you all the best with your upcoming surgery. Look past this bump in the road to having a cancer free future!

Hi Claire,

I just wanted to ask if you have children? If so, it would be really helpful if you can have someone help out - at least the first week.

I had a lateral tongue resection 1/17/11 and am 5 weeks out. Are you having a resection or partial glossectomy? My tongue was sore and I slurred my words for 2 weeks following my surgery. The best advice I can give you, like Christine mentioned, is to take pain medications if you need them. I tried not to take any and the pain was extreme. Once I got it through my head that it is okay to take them, life was much more pleasant.

My surgery was inpatient and I didn't have any lymph nodes removed. I still have some difficulty eating and a minor lisp but am told I should be back to normal soon. Hope this helps a little as what to expect in regards to your tongue. I am sure you will hear from some others who have had a neck dissection.

I am so glad you found this site! When is your surgery?

Yvonne

Thanks for the responses. I am going to a cancer center and they are familiar with oral cancer. From everything I've heard I will just be having surgery, since it is a very early stage and the tumor itself it very small. The scan that I had did not show it as having spread to the lymph nodes, they are taking the lymph nodes out to be sure that they have all of it.
As far as the tongue surgery, not sure what the official name for it is. They are only taking out the part around the tumor, which is on the left hand side and small <2cm so I should have a lot of tongue left. From what I was told, nobody would be able to tell that I had part of my tongue removed except me and anyone I tell.
Surgery is a week from today. No kids.

Claire...awesome decision my dear! CCC's are the place to be if you're diagnosed with this stuff! Keep your chin up but I think you've got this thing.

Eric

Hi Claire - So glad you found this forum. Sounds like you are in the right place for some quality care and how great that your team of doctors did such a good job explaining everything . My son had 1/6 of his tongue removed and right after surgery, the doctor came and explained everything that happened and also mentioned that the tongue "regenerates" itself. It probably depends of course on how much is removed. Other information I read re this is that the tongue spreads out to fit the space it finds itself in. Right after surgery, my son communicated with his laptop because of the soreness, and he only had a slight lisp for a very short time after that and no trouble with speech. He's doing just great, now! I'm sure you will, too.

Hi Claire
My husband's 1st surgery was for a removal of about 1" sq area midway back on the underside of his tongue. He had a little slur for a couple of weeks but could be understood right after surgery and was eating before leaving the hospital. He did have PT for limited shoulder movement due to the lymph node removal and that was probably what bothered him the most. Hope this helps.

Hi Claire,

First, welcome to OCF. I'm glad you found this site so early in your treatment. Your story sounds just like mine...sore on my tongue and the dentist sent me to the oral surgeon and the rest is history. I was 27.

I can't lie...you will be in pain. I never had any lymph nodes removed so I can't speak to that but the partial glossectomy (I'm assuming that is what they are doing?) is painful. I would suggest to buy plenty of soft foods and Ensure. It is important to get calories so you can heal properly..I made that mistake once and it wasn't fun. I have had 4 partial glossectomies...

About the surgery..I know you are nervous. Try to remember this is what these people do everyday. In my experience the doctors and nurses are so kind and will put you at ease..hang in there and keep us posted:)

((((hugs)))

Hi Claire,

Sorry you are having to go through this but you've definitely come to the right place for information and support. I had a partial glossectomy on 2/2/11 so am three weeks post surgery. I had an artificial graft on the side of my tongue, wore a bandage for two weeks and was on a totally liquid diet for that period as well. Last week the bandage came off and I can eat pretty much anything I want except sharp food like chips. I also find acidic or spicy food to be painful. This is the third surgery on my tongue and the fifth in my mouth. They were all a little painful but nothing that the meds couldn't handle and in all cases I was eating and speaking normally within a month if not sooner.

I haven't had any lymph nodes removed so I can't speak for that but hopefully that too will heal quickly and with no more than moderate discomfort.

Wishing you all the best, you're in good hands- both with your surgical team and your new found friends here. Will be keeping you in my thoughts! Keep us posted.

Hi Claire,

Sorry you are having to join us here but you could not have found a better resource of caring people. In April of 2010 I had the same 2 procedures you are having. The only difference was my tumor was on the right side of my tounge. I was in the hospital for two days after the surgery and was back to work in about 10 day's. I am almost a year out from my surgery and I have no pain and the scar on my neck from the partial neck disection is almost invisible. I had a follow up appointment with my surgeon today and everything is still looking great with No signs of any problems.

I know the surgery may seem scary, but I found that in reality it was not all that bad.... (although not pleasant) :-)

I would be happy to answer any questions you might have since our dx and treatments sound like they are almost identical.

Tommy

Hi Claire,
I'm surprised Davidcpa has replied to this. Why are they recommending a neck dissection for a T1N0M0? Are you being treated at CCC? I would seek a second opinion on the necessity of having the neck dissection unless there have suspected lymph node activity on a scan or can feel it. This surgery can have permanent side effects.

Take care,
Eileen

I am being treated at a CCC. From the sounds of it they are taking out the lymph nodes despite having nothing showing on the scans because they considered the risk high enough that it may have spread and also that it takes a certain size/amount for things to show up on scans. They also said my age played into it a bit in that if I was older they might not take out the lymph nodes but since I'm younger they'd rather be sure they have everything out. But in the end I really don't want to be wondering if it's in my lymph nodes or not for the next 5 years.

While there are side effects associated the surgery as far as nerve damage when I asked what percent of his patients ended up with those side effects he said there weren't enough to warrant a percent. So while thats no guarantee that something won't happen it made me feel a bit better about having them taken out.

Are they recommending radiation in addition to the neck dissection or are you skipping that bullet?

Take care,
Eileen

No radiation.

Sounded like radiation can usually only be done once and they think they can take care of this surgically especially since it doesn't seem to have spread anywhere. Then if there is recurrence or I get some other ailment later in life that might require radiation it would still be an option.

No radiation is a good thing...that's for sure. I dodged that bullet too. Of course only because they want to have that to use in the future if needed.

Claire, adding my welcome. I'm glad to read that you won't need to go through radiation. Whew! Wishing you the very best in your surgery. Please keep us informed.

David 2

Hi all:

I'm Kevin and just got the bad news yesterday. 2cm SCC, floor of my mouth. I felt like I burned it with hot food a couple weeks ago, but it didn't go away, so I saw a specialist immediately (E,N&T).

So anyway, here I go...stressing, though not worried about me, just my wife.

Best to all,
Kevin in TN

Hello Kevin:
Welcome, I guess, but this is the most wonderful place ever to get information concerning your type cancer and treatment options others have experienced. You immediately went on my prayer list, and I wish you the best in your journey to a clean bill of health. Others will respond when they see your message on the Forum and you will be given all kinds of good information. So, welcome because of that, and "I guess" because I hate anyone having to face the battle.
juliann

Hi Kevin,

Welcome to OCF...you have found a wonderful group of people. Can you start your own thread so all posts will be for you? Go to any forum that you wish to post under and under "topic options" you will see "new topic" "Introduce Yourself" is usually the best place to start. We are here to help you...

I am so glad you caught yours so early. I wasn't so lucky, but my surgery for my tongue was much bigger then it sounds like urs will be. I had half my tongue removed, and neck dissection.

Every one is different, I am almost a year out, and still have tightness in chin/neck area from neck dissection, but i also had an infection in it before i left the hospital. Mine was also much more major then yours, and i had radiation. so a lot of the things i feel may not fit to yours.

I know this is scary, but you are so lucky to have this caught so soon!

I wish you luck with your upcoming surgery, you will be in my thoughts and hope for a fast recovery for you!!!

I will say this, I know that no matter how major of a surgery this is or how minor, the word cancer at our age is very scary, I am probably 2 years younger then you. All we can really do is try to stay as positive as possible and appreciate what we can do after surgery, except any possible changes as the new normal, and just be greatful to be alive and able to continue on with our lives!

If you need anyone to talk to, or would like to talk, I am here. I like you, had no children, but I did have my boyfriend and my mom, dad and bro that were amazing support through this all!
I hope you have a great support team as well! If not, this group of people is amazing and helped me so much during my treatment!

Hi Claire,

It is good to hear that you caught it early as I did as well. My dentist and I discovered a lump behind my upper front teeth. If I had actually listened to him at first, I probably would not have had to have such a big surgery. Who knows. Mine was also T1N0M0 and my Oral Surgeon offered Radiation and removing lymph nodes if that is what I wanted to do as a precaution, even though he said I did not need either. I got a second and third opinion from the Oncologist and the Radiation Oncologist and they both concurred that there would be more negative effects of both than benefits. My scans were clear except for one lymph node but that turned out to be from getting sick. They did biopsy the lymph node. I am not an expert at all, in fact my six month checkup is coming up but I feel that if anything does pop up, they will be able to catch it as long as I keep my appointments up. I am just not a fan of unnecessary surgeries. I am all for being cautious but not too overly cautious. I agree with a previous poster about getting another opinion. Just my take. Thank you for your time.

Hi claire, welcome and sorry you have to be here. I too had a tumor on the left side of my tongue. Had a partial glossectomy with a reconstruction of my tongue with skin from my wrist - your's doesn't sound that involved so it is likely smaller - mine was 2.5 cm with a depth of 1.5 cm. I also had a neck dissection and nodes removed - I don't know how many but i will find out today as I have my post op appointment - the surgery was upwards of 10 hours because of the reconstruction but healing went well. My neck and shoulder are still a little stiff and my range of motion is still somewhat limited but I've had no real pain. Mostly numbness. for the most part the neck dissection has been the least of my issues - the scar on my wrist is just nasty not really painful - just ugly - and since you will be avoiding this you'll be fine. It may take a month or two to recover but you are young and that's in your favor. I am 3.5 weeks post op and feeling better daily. Best of luck with your surgery.